William Kracke replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
Lungs Turning Into Leather.
Not really accurate but gets the general concept across.
William Kracke replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 1 year, 4 months ago
I have a similar issue with my insurance (TRICARE for LIFE as retired military). They use Express-Scripts for all drug transactions and I have to get a form filled out by my pulmonologist and sent into them to get the prescription approved. The approval lasts for a year and I have to go through the whole approval process again. While this ma…[Read more]
William Kracke replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years, 3 months ago
When I was diagnosed with IPF (over 5 years ago) I, too, was totally set back by the 3-5 year median life span after diagnosis. Over the last 5 years I have determined the following facts:
1. The statistical analysis apparently was conducted on data from 1992 to 2003
2. Diagnosis of IPF was apparently made much later in the progress of the d…[Read more]
William Kracke replied to the topic GLPG1690 Clinical Trial in the forum Clinical Trials 2 years, 7 months ago
I enrolled in the 1690 trial in August 2019 at Yale New Haven. After COVID hit Connecticut mid March of this year they had to stop enrollment and all trial visits until they got COVID under some sort of control. I just had my first trial visit since February. During the no visit period they arranged for local lab blood draws and other safety…[Read more]
William Kracke replied to the topic Apple Watch 6 Might Include Pulse Oximeter Benefitting PF Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years ago
I have a Samsung Galaxy S8 that has an oximeter function. Unfortunately during an update of Samsung Health app they decided to eliminate the stand-alone oximeter function and it’s tracking function and incorporate it into a fairly useless “stress” function which doesn’t include oximeter tracking or history, just the current value, which I still…[Read more]
William Kracke replied to the topic Scared About The Future Implications of IPF in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 3 months ago
Charlene – many years ago, I was laid off from my job at age 50. At that time I did some figuring with funds we had in the bank, unemployment, and severance pay and determined that I had about 6 months of search time if we pulled in our belt. Well as you may (or may not) realize, age discrimination in the hiring process is rampant, nothing that…[Read more]
William Kracke replied to the topic What is your PF/IPF "Elevator Speech"? in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 4 months ago
Charlene – I generally do get some more questions and I try to provide simple answers. I also try to avoid presenting my condition as terminal (even though it is) and just say that it a progressive disease and cannot be cured. I also tell people that I am on medication that slows the progression and that my condition has been fairly stable, so f…[Read more]
William Kracke replied to the topic What is your PF/IPF "Elevator Speech"? in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years, 5 months ago
Charlene – I usually use “IPF is a chronic, progressive scarring of the lungs that makes it harder to transfer oxygen into the blood. Sort of like my lungs are slowly turning to leather.” Not really accurate but descriptive for understanding. I don’t mention that it is “terminal” or “life threatening” because in my case and my age (72) a lot o…[Read more]
William Kracke replied to the topic Have you ever tried pursed-lip breathing? in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 10 months ago
First thing they teach you at Pulmonary Rehab. Supposed to be best for COPD but I have found that it works just fine in restoring my O2 levels quicker and maintaining O2 levels under exertion and exercise. I use it all of the time and recommend it, even if you have heard it is not useful for IPF. Works for me.
William Kracke became a registered member 5 years, 2 months ago
Hi William, thanks for joining the PF forums and welcome!